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Friday, 12 May 2017

It's one thing to be told you have a disease that is not yet fully understood, while doctors do their best to seek out treatments. It is quite another thing to be told your life-altering illness is only a self-inflicted burn-out, and that you just need to take more exercise and think more positively. I joke not. Many patients report this type of attitude from their medical professionals.

The problem is this: NICE guidelines recommend Graded Exercise Therapy & Cognitive Behaviour Therapy as the best available treatments for "CFS/ME". Some doctors interpret such advice as: "Get a move on!" and "Stop dwelling on things!"Do these doctors not realise that ME can be serious? Indeed, so serious that it can render the sufferer helpless and in a an enduring state of physical misery? Do these doctors not recognise that exertion can make the health of fragile patients plummet? Do they not notice?

If not, why not? The ME community has been saying for years that exertion harms their health - sometimes permanently. Yet still the NICE recommendation for exercise remains. And the newly ill are still given advice that could cause them long term disability. And time goes on and NICE guidelines are still not changed.

We are told the guidelines will be looked at in 2017 to see if they need to be reviewed, but there appears to be no urgency to this process. We also have no reassurance that the experts being consulted on the decision are cognisant of the harms of exercise for ME. Are these reviewers taking new research seriously? Are they prepared to ditch evidence from trials that fail to stand up to scientific scrutiny? And if so, why are changes happening so slowly? Now, here we are in the month of May again. Still trying to "raise awareness", still blogging, still protesting, and still campaigning. Yet little has changed for patients in consulting rooms across the country.

Why is that? Why? Just Why?

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PS I read somewhere recently:If you want to change a person's established view point, that reasoned arguments and referenced literature have less effect than simple questions. So I have chosen not to expand this post with detail, but simply to ask the question "Why?".

Firstly I would like to say a big hello to everyone as I’ve been too unwell to manage any attempts at social media for the best part of a year, but I really wanted to make contact and post (a brief) something for this year’s ME Awareness campaign.So what’s happening? I do feel so out of touch with everyone and everything…For me its three and a half years now since my world turned upside down from ME/CFS and I honestly had no idea just how unwell and incapacitated it is possible to feel, BUT with very aggressive rest and extreme pacing I am sometimes able to manage brief spells of feeling slightly less deathly… HOORAH !Prior to December 2013 I was working full-time in healthcare and now I am about to enter ill-health retirement almost two decades too early, which is not something I ever imagined happening.I don’t know what the future holds but I am learning a new reality, to take and deal with each minute, hour, day as it comes, and I keep hope for those moments when symptoms ease a little.Myalgic Encephalomyelitis is REAL, its PHYSICAL and it destroys lives so please help in raising awareness and support… so that we can start living again and not just existing.#May12BlogBomb 2017MerelyExisting is ME @tweetsforMECFS

Guest post from Wendy for #May12BlogBomb 2017 on courage and how it relates to having a long term debilitating illness:

Courage

Courage! What makes a king out of a slave? Courage! What makes the flag on the mast to wave? Courage! What makes the elephant charge his tusk in the misty mist, or the dusky dusk? What makes the muskrat guard his musk? Courage! What makes the sphinx the seventh wonder? Courage! What makes the dawn come up like thunder? Courage! What makes the Hottentot so hot? What puts the "ape" in apricot? What have they got that I ain't got? Cowardly Lion Monologue on the Wizard of OZ

Courage is the ability to do something that frightens one, as in "she called on all her courage to face the ordeal." Or strength in the face of pain or grief, as in "he fought his illness with great courage."

Tenacitygives birth to stubborn persistence and unwillingness to admit defeat. “held to their beliefs with great tenacity”

You may not always have a comfortable life and you will not always be able to solve all of the world's problems at once but don't ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own. {Michelle Obama}

When you live with chronic illness, every aspect of life takes on a new dimension. Your daily decisions and choices are examined through a new lens, and you often find yourself carefully weighing the ramifications and possible outcomes of your choices. But, wait, wasn't this the way it always was? This is something all intelligent and responsible adults do? However, living with Myalgic Encephalomyelitis broadens the scope of that decision making process. The question isn't only how will this decision or choice affect you, but also, how will it affect your illness which in turn affects you and the choices and decisions you continually make.

“Catastrophes create heroes, people who know how to deal with trouble. They come in all shapes and sizes to take the lead: a medical worker, a lottery winner, a neighbor, bystanders, a priest, a child”

The notion of choice occurs at many levels. We have little or no choice about the thoughts which randomly occur to us. We do have choice about how we choose to act, that is, what we do about the thoughts. We also have choice about how we feel. Not choice about the feeling we have now - that is the result of past choices, but about the feeling we have next. We can be sad, and choose happiness, angry and choose love, etc. There is not any "right" way to "be," just possible ways - each with consequences. From a purely pragmatic perspective - evaluate the choices you have made, see what the effects have been. What is it that you want? What choices are you prepared to make to support those ideals ? Some things achieve what we want, others don't.

“Success is not final, failure is not fatal: it is the courage to continue that counts”. {Winston Churchill}

Living with a complex chronic illness such as M.E. is a search for quality of life. One needs to be well informed about their illness in order to manage their physical symptoms as best one can. However, one also needs to learn to live with a certain amount of ambiguity and uncertainty. Striving for a balance between work and play, rest and activity, relationships and solitude, and grief and joy, the challenge Myalgic Encephalomyelitis means we must come to accept our limitations and appreciate our gifts.

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” {Nelson Mandela}

Obviously, this is a demanding aspect of living with chronic illness. It's also the measure of your courage. Living with illness affords ample opportunity to be courageous in living your life to the best of your ability. Because when limitations and diminished control over the effects of illness are part of your daily life, your choices and decisions become the stuff from which courage emerges. The fact is, if you're living with Myalgic Encephalomyelitis you are courageous. In the process of meeting life's challenges, you have learned and are continuing to learn how to meet your fears and move beyond them.

“There Is Courage In Being Vulnerable. Courage is borne out of vulnerability, not strength.It is when we are at our weakest we find our strength through courage.”

Being real, being raw, being authentic, laying bare your flaws and discovering your voice can have massive power. Standing in who you are, owning your strengths and weaknesses and accepting who you are is amazingly powerful. Most people have been raised to believe that vulnerability equals weakness. But it doesn’t. There is incredible strength and courage in vulnerability. We must live in the space of vulnerability. Vulnerability is not just about fear and grief and disappointment it is indeed the birth place of everything we are hungry for : joy, creativity, faith, love and innovation.

This is an inspiration for all of us around the world. We can not be invisible any longer without risking our lives. We need proper care and medical treatment, funding for biomedical research, education for those in the medical profession who need to learn more in order to treat us but more importantly we need acceptance and understanding in our communities because our disease is so complex one can only understand it by contracting it themselves. We need to show that this can happen to anyone.

Sunday, 30 April 2017

May is awareness month for ME, CFS, Fibro and Lyme. Over the past few years, I have encouraged bloggers to share their awareness raising blogposts using the hashtag #May12BlogBomb.

Hashtags like this work on both Facebook and Twitter, because they become hyperlinks to a list of all other posts publicly shared using the same hashtag. (Indeed searching the #May12BlogBomb tag now should bring up some of the posts shared in previous years.) So, if you are writing a blog during the month of May, please use the tag #May12BlogBomb where-ever you publicly mention your post on social media. Perhaps also consider sharing your post a few additional times on May 12th itself using the same tag.

This way our "blogbomb" will get coverage throughout May but will also get concentrated coverage on one day: May 12th.

2017 Link List for #May12BlogBomb:I will once again collate blogposts written for May Awareness into a link list on Just ME. If you would like your awareness blogpost included on the 2017 list, please submit your post details here as soon as the the post has been published:

[Edit 3rd May - Apparently the form below only allows one response per person and doesn't work on mobile devices. Please trythis link as an alternative.]

Note: Please don't submit posts already linked in previous years' lists, nor posts promoting a business nor asking for money. The idea is that these posts are written and submitted by patients, carers, and/or families of those affected.I will collate links through the early part of May, and publish the list as it stands on May 12th. Additional submissions received during the rest of May will get added later. (The above submission form runs only to the end of May).

The choice of topic is of course your own, and there are various angles that these awareness posts can take. Some people have used a series of photos, others have written poems, or contrasted their previously healthy lives with their current health status. There are also posts that have looked at the historical background to our medical treatment, and some that look to the future. The only suggestion I make is that you make your post friendly to those new to our situation.

If you would like to write a blogpost but don't have your own blog, I am happy publish suitable guest posts on Just ME. Please email me at keelatoo@live.co.uk to discuss this option.

Previous #May12BlogBomb Link Lists can be found on these pages:

2016 - 2015 - 2014 I am delighted that the idea of a "blog bomb" has proved so popular, and hope that the blogs written and shared using the #May12BlogBomb tag will spark greater interest in our situation, and create some public sympathy towards the various campaigns for change.

Thank you to all the bloggers who have participated in this awareness raising event over the past years, and also to all those who will join for their first time this year.

#May12BlogBomb - the tag to amplify the voice of all May Awareness Bloggers!

Friday, 10 March 2017

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

Aches and pains go with many forms of illness, and ME is no different. So when I was offered a sample bottle of this Rejuvenation Lotion from The Fay Farm, I decided it was worth the small obligation of an honest review on my blog.

The Fay Farm advertises "hand made organic body care" products, and the Rejuvenation Lotion is one in a series of products that all aim to improve well-being.

Rejuvenation Lotion is made with organic ingredients including hemp oil, magnesium, tumeric, licorice and valerian.

I have been using Rejuvenation Lotion now for just over a month, and find the lotion to be both soothing and calming on muscles. I use it mostly in the evening for muscle burn (which I suspect is linked to lactic acid accumulation) and also for the infamous "jumpy leg syndrome", which can be so unsettling when tired and just wanting to rest.

Friday, 17 February 2017

This is a "therapy" that the NHS still suggests will help people with ME.

The premise is almost plausible and runs something like this (my words):

Exercise is good for everybody, so no matter how ill you are it is always good to encourage you to move about more.

The thinking also suggests that:

People who have been ill for a very long time start to reap secondary benefits from being ill and therefore need to be persuaded to leave behind their sickness role.

Is that so?

When I was at my lowest, I adjusted everything I did downwards in order to make my life as easy as possible. Indeed having learned about the effects of exertion on ME symptoms first hand, I was continually cautious about doing stuff that might cause me to further relapse.

Yet, even knowing the risks of exertion, I was still vulnerable to the "Use it or loose it" message, that is so popular these days. Occasionally, I even considered that, I might be over-doing this resting thing. I thought perhaps all I really needed to do, was summon a bit more motivation and get going . . .

I promise you THAT never ended well!

The truth is I always wanted to do more. The fact that I withdrew from loved ones, and refused almost all social activities, was one of the toughest things I've ever had to do. Yet, it had to be done if I wanted to prevent further decline.

So the limits of my physical body were ever present and ever frustrating, and gradually over time my mind started to build its plans within those limits. It's a form of adjustment and acceptance. Sadly, every further slip downwards included a whole new cycle of frustration and adjustment. Being ill is like that.

Yet, psychiatrists think of these genuine lifestyle adjustments, as the patient adopting a sickness role. Well yeah! When you're are sick it is actually important to adjust your lifestyle to cope. And certainly a newly sick person's role in society has to change. Those with long term ill-health are not well enough to fulfil the role they assumed when well. For me, the adjustment to adopting a more dependent role, was not one I took lightly.

However I didn't ever "choose" this sickness role. Certainly it became part of my life, but only because it was forced upon me.

So back to Graded Exercise Therapy:

The bio-psycho-social premise under which GET is applied suggests that people with ME are actually no longer physically ill. The premise concedes that the illness may have started with a viral trigger, but after that, it suggests that sufferers simply maintain their role as an ill person!

With this logic it is easy to suggest that people with ME have just allowed themselves to become de-conditioned. They don't use the word "lazy", but in reality that is how people with ME are painted. Exercise is then the obvious "cure".

I have a big problem with this concept, because it suggests that ill people would maintain their restricted life patterns even after they became well again.

Do they? Or more personally, did I?

I can answer this with more certainty now, because in late 2015 I started on a drug* that changed my illness, and I became able to do considerably more than before. Of course, I was "de-conditioned" - physical inactivity does that to muscles - so it took some time for me work up to my new physical threshold.

Did I need a GET therapist to persuade me to take up that additional capacity? No. I did not!

As the severity of my symptoms lessened I spontaneously took up the extra ability that my improved health offered. Over time, I carefully let go of many of the layers of protection I had built around my earlier fragile health and I re-adjusted to my new reality.

This just happened. I didn't need any therapist to persuade me that I needed to do more, nor to push me to increase my activity! Joyfully, and with great delight to those around me, I was able to pick up parts of my life that I'd been forced to abandon.

How could I ever have questioned my own judgement on my physical limits?

Sadly it seems that society puts incredible pressure on each of us to be "well", and I now recognise that I was not entirely immune to applying that societal judgement to myself. Society seems to assume that illness is black or white. The greyness of long-term chronic incapacity is not well accepted. Public sympathy runs out, and there is a pressure to get well again. Graded Exercise Therapy is part of that societal pressure. Combined with Cognitive Behaviour Therapy, these two NHS "treatments", effectively tell ME sufferers that they are not really ill, and that it is time they chose to get better!

So this is what I can't understand. Why do researchers of the bio-psycho-social school ignore patients who tell them that Graded Exercise Therapy is causing harm? Why do psychiatrists continue to push versions of this therapy in their research and in their many highly publicised media-spun stories? And most pertinent of all, WHY do these researchers ever get funded to test their therapies in children? ME children and adults are constantly being told that these therapies "work", and when they don't, no questions are asked of the therapy itself. It is only the person who failed to make themselves well again that gets scape-goated!

It is time GET was stopped.

GET out!

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* As I mentioned above I have tried a drug, I'm not yet sharing more detail. I can say, I am happy to be doing substantially better than I was, however this is not "recovery". I have a new limit, that is still very real. I can't exercise through that new limit, any more I could the old one. Nonetheless, I am very grateful that the tight grip that ME had on me, has been partially released. I am still ill. I still need to protect my health by imposing limits on my lifestyle, and those limits are still frustrating, despite my delight at now having a greater energy budget. Let's hope that soon there will be many more treatment options for everyone, and that GET rapidly becomes a thing of the dark and distant past.